Catherine Ardagh (Fianna Fail) | Oireachtas source

I would like to call on the Seanad to schedule a debate on the Government's funding, or lack thereof, of the cystic fibrosis drug Orkambi. It was with deep regret that I learned that the National Centre for Pharmacoeconomics said the drug does not represent value for money and should not be funded by the Government at its current cost. Professor Michael Barry of the National Centre for Pharmacoeconomics, who is also on the HSE's drug groups, said Orkambi can greatly alleviate the symptoms of cystic fibrosis but was not value for money because of its inherent efficacy. He said the drug, which costs about €160,000 per patient per year, would only work for 25% of patients.

On the other side of the debate, Cystic Fibrosis Ireland has called for Orkambi to be made available in Ireland and has said that it is a life-lengthening drug and would benefit up to 550 patients. Ireland, as we know, has the highest rate of cystic fibrosis per head of population in the world. Approximately 1,200 people live with cystic fibrosis in Ireland. We also have some the most severe forms of the disease in Ireland. Orkambi has been shown to reduce hospitalisation of up to 40% of patients and significantly retards the progression of cystic fibrosis for those who stand to benefit from the drug.

Cystic Fibrosis Ireland said the drug would result in other major savings to the HSE from reductions in hospitalisation, reliance on other expensive cystic fibrosis drugs and dependency on transplants. We know many cancer drugs currently in use cost a lot more to the Exchequer. I ask the House to open up the debate and have a proper discussion about Orkambi and its use for cystic fibrosis sufferers.